[Ski]

#1075018

We do understand, and we’ve been there ~ the most important thing to remember is that this CAN be fixed, IS being fixed, WILL at some point be fixed for you. Right now you are still recovering from the initial assault, and you probably haven’t even hit normal thyroid hormone levels, so your body is VERY VERY sick. One day won’t fix it, one week won’t fix it, one month won’t fix it. It’s a slow, slow process. Look for small improvements, not big ones.

People DEFINITELY do get counseling through this process ~ try to find a counselor who has experience dealing with thyroid conditions, because they’ll understand much more before you even walk through the door. If you need antidepressants for a short time, just so that you don’t feel so hopeless, that’s a perfectly valid decision to make.

As you say, one of the most frustrating parts of the healing process is that we can have the same day every day for two weeks, and suddenly it’ll kick us like a bad-tempered mule and we feel awful. There’s no telling exactly what the dynamic is, WHY it suddenly takes us out of commission, but understanding that it does is very important. It is NOT a personal weakness, you cannot just "snap out of it" and "feel fine," it is a chemical imbalance that is doing a number on you right now.

Two things. Forgive yourself for not being well. And forgive your body for taking a long time to heal. Do what you can to make yourself feel GOOD, even if it doesn’t make you feel 100% good. Watch the sunset. Take in that movie you’ve been dying to see. Have a nice dinner out with your best friend. WHATEVER it is that will make you smile, do that. It helps when things go haywire, it really does.

[Bobbi]

#1075019

Perhaps you have collected some bad info somewhere about PTU. I am unaware of an issue with brain swelling. The only issue that I know of regarding liver function is that due to the fact that it is metabolized in the liver (as are many, if not most, drugs), it can adversely affect the liver. Typically, our doctors look at liver enzymes in blood tests from time to time to make sure that that is not occurring. If it is, stopping the PTU at that point usually stops the problem. You can help things along by not using alcoholic beverages (they’re tough on the liver) or other non-prescription drugs that are known to be hard on the liver. The main other problem with the drug is that it can, in extremely rare circumstances cause a serious lowering of the white cell count. This would make us vulnerable to infection. Again, most of our doctors run a cell count test with blood work from time to time. If we turn up with a bad sore throat, or other infection, we are advised to see our doctor right away so that such a blood test can be given. Again, if the drug is stopped, the problem usually goes away.

What concerns me is that you have lowered your dose of PTU both due to nausea, and due to your fears. The problem with this is that insufficiently treating the hyperthyroidism isn’t good for you: it is easily as bad, and possibly even worse, than anything the PTU is likely to do to you. Even minor levels of hyperthyroidism leach bone from the body, and destroy muscle over time. If you cannot take the prescribed — and necessary — dose of PTU without problems, you need to talk with your doctor about 1) the other ATD, methimazole or 2) removing your thyroid (via surgery or RAI) and going on replacement hormone.

I do understand your fears, and my heart goes out to you. In the first weeks of treatment, I still felt horrid too. But it does get better with proper treatment, and we can get well again.

Bobbi — NGDF Online Facilitator

[Hopeful23]

#1019920

Well, The past few days I was thinking I was on the path to feeling ‘normal’ again. I was full of energy felt the best I have in months was working my full shifts and then today I wake up and feel as if I havn’t slept in days. I am so tired and feel anxious and fearful of whats gonna happen. I did go to sleep at like 1am and woke up at 8 to drive home when my bf left for work. Maybe that is the cause, but I’ve been doing that since the begining of Dec. I had to call off work because my body just felt tremorish and sluggish and bouts of rapid heart rate. I took a shower and have been on my bed since. I try to lay down but i doze off and on and feel worse. I thought I would get on here to talk about this day with the people that understand the most. I don’t understand why can’t this be fixed :” title=”Question” /> im really sad and feel alone today and all my follow ups are not till the 23rd. I understand dr’s can only do so much but i feel every 4 weeks is too long to wait but at the same time I don’t see what every week or two will accomplish either. Does anyone go to counseling for this?? Do a lot of you go to the endo every 4 weeks or sooner. I was just diagnosed late Oct and Confirmed GD in Nov so my thearpy has only been PTU for that long. Sometimes when i feel like this my legs shake uncontrolable and I feel like a bowl of jello when I walk, does anyone know what im talkin about?? I have had a headache for 2 days straight and it finally subsided. I have history of migraines so im assuming it was that but am going to the neurologist because ive been experiencing sharp dull deep like pains above my right ear and like nerve shocks. I have been in several accidents that caused sever whiplash so dr’s a while ago thought it was from that but I am almost certain I have an aneurysm above my ear. Its sensitve to the touch and hurts all the time. I have had CT’s and MRI’s done over the summer and they were all negative so im sure its not that but what else could it be, I don’t see symptoms that GD would cause that. I am just so tired of a new symptom everyday. Can’t i just get it treated and be done with it. This is so frustrating. I have been taking my meds 2 pills 2x a day instead of three cause it was making me too sick ( nausea). I am afraid to get the rare side effects such at the liver/ brain swelling. I keep thinking when im sick thats whats happening. For the ones on PTU can you tell me your experinces while taking it. I would like to have something to compare it with.

Well im going to go lay down, thanks for reading this it means the world to me.

[npatterson]

#1075020

Dear Hopeful,
Ski and Bobbi gave you great information. I will advise you about counselors. The chances of finding one who deals with Thyroid problems is almost non-existant. If you have a rehab hospital in your area, they may have someone that deals with people who are genuinely sick, and also very upset by the effects of the illness. You do not need a behaviorist, nor an energy-therapist. YOu need someone who understands the biology of excess thyroid hormones, and the havoc they can wreak. A good psychiatrist will understand. We have literature available, and I have talked to many therapists over the years.
That is not to say that we all don’t come with a boatload of our own "issues" that are not magnified by our Graves’.
I hope you get back to your Hopeful-self soon.

[Mickey65]

#1075021

I’m sorry to hear about people who are having emotional issues with their illness, but I can’t help but wonder why I’m not?

All I keep in mind is that I’m sick and trying to get better. Emotionally I’m okay with what’s going on with me. The more I read boards such as this and all I can about my disease, I feel more informed and able to deal with it.

I think maybe it’s because I caught my disease in an early stage? I’ve been reading about people dealing with their illness for YEARS.

It was my hand tremors that sent me to a doctor. I didn’t even notice I had a high heart rate! I think it was about 4-5 months of tremors I had noticed. I just got my RAI on friday the 12th.

I’m sorry to sound a little hard-nosed about things, but I guess either I’m not suffering emotionally as a symptom – or maybe it hasn’t happened, yet?

I don’t know, what makes me not mope about my illness, is the fact I know people who have it worse than me. My best friend was an alcoholic and had a lot of health issues come about because of it – liver failure, 2 hip replacements, throat cancer, and rotting teeth. Thinking about him, makes me feel I have nothing but a head cold compared to him!

But this is just me. I apologize in advance if I’ve hurt any feelings here… ” title=”Neutral” />

[Ski]

#1075022

Hi Mickey,

Nothing to apologize for! ” title=”Very Happy” /> Some people deal better with things than others do, that’s just a fact of life. Emotional issues are not a given, but they are common, and they are definitely exacerbated by previous conditions, by separate stressors, by a sense of denial and fear of the unknown, etc. etc. etc. There is also the chemical component to the changes we undergo while hyperthyroid. You’ve gotten the help that you need, you understand what’s going on, that all helps, and a generally good attitude serves one well. For those that need assistance, there are options. That’s all we’re saying.

[cathycnm]

#1075023

Mickey – There is some good research that says optimists fair better with a variety of ailments than pessimists – and that this is partially genetically wired. Perhaps you have read about something called "learned helplessness" that was discovered when they shocked dogs in a lab at random times (the dogs could not escape the shock). Later they put the dogs in cages where they could escape the shock – but they did not even try because they had become helpless. The interesting thing to me is that 1 in 10 of the dogs never got helpless and continued to try to move away from the shock even when that was impossible – that is an optimistic dog!!! ” title=”Very Happy” />

Recently we have found men having second heart attacks are more than twice as likely to survive a second heart attack. I teach a course to nurses about the health aspects of optimism – there are many studies that are similar from breast cancer to the common cold.

Even though optimism is somewhat genetic, pessimists can learn optimism building exercises and become more optimistic. Somewhat like a weight set-point where someone with a large genetic risk for obesity can control this with diet/exercise – but it is always more work for them than it is for the skinny minney family down the street.

It could be you are an optimist – what do you think???? :” title=”Question” />

[Mickey65]

#1075024

Well I am an Aries – and we are Optimists!

I guess I feel as soon as I knew that my illness was treatable and not fatal, or terminal, I just look at it all differently and know eventually I WILL get better and just have to ride out the symptoms or whatever happens with my body.

Last night I walked about a half block (if that really) to get my mail from the street, and when I turned around to come back, my legs really started to hurt, but I slowly shuffled back home (with the dog pulling me along with his leash!), and just told myself, "Okay this must be one of the symptoms I have to deal with". Once I got back in the house and relaxed my legs for a bit, the pain went away.

I just decided to keep a positive attitude about things. I guess like I said, feel better knowing I WILL get better and it’s not a terminal illness. Just makes it all easier to deal with, keeping that in mind.

[cathycnm]

#1075025

Mickey – One of the strategies we teach to folks who want to be happier is to compare our situation with someone who has it worse. So, you do have a nack for knowing how to stay positive!

I had some issues when I was first diagnosed because it was scary to be ill and to live alone with closest family in another state. And my coworkers do not work on the same site I do, for the most part. I felt so isolated and scared. It got the best of me for a few months – esp when I was going hypo and starting a second masters degree (online so no human contact there, either). Since my thyroid hormones have started to normalize, I find it easier to get out of these fear based thoughts. I really like your point – it is treatable and I think there is always a chance to come out as stronger-spirited people if we can use it as a lesson. In true resilience – I would say if we can use it to find a way to serve society – like others with Graves – then we have come full cycle.

I am planning to volunteer in some capasity for NGDF and need to get in touch with Peter. If I can take my own experience with Graves and my medical background to help others – it is win/win because I, too, benefit from the positive.

Your optimism is a light for all of us!!!

[Hopeful23]

#1075026

Well I better jump on the optimistic train…lol…Well, first off I wasn’t trying to sound like I was the worst one on here I was just simply stating it was a bad day and was venting. I know there are others out in this world who have it much worse (ie. Cancer etc.) However, I am 23 years old and have been going to the dr for 2 years and was told its all in my head. I lost a great job, lost my place in my nursing program, lost a boyfriend and lost so much weight I looked skeletal. I just got diagnosed in Late Oct with hyperthyroid and GD in Nov. I am still new to ‘new’ symptoms and types of treatments and was just merely looking for comparison stories. I understand you are a strong person but unfortunetly my strengh has diminsed over the past two years. Im not writing a guilt story im just telling you why i have yet to come to terms with anything because there is more going on with me than GD but the dr’s are now just blaming everything on GD and im sick of it. I just have to be proactive with myself until I find the answers. Thats how I found you guys because I didn’t settle for this is this because of that…Thanks for all the responses tho…every now and then its good for a smack in the face…lol….

Happy Holiday.

[Ski]

#1075027

Hi again Hopeful,

I hope you didn’t interpret the past few posts to be in some way diminishing your own situation ~ everyone has a different road to walk, and yours has had many bumps (lack of a diagnosis being especially debilitating), plus you are still struggling to figure out which road to take next. It is overwhelming, and in the face of so much loss, naturally you’ll have bad days. And we’re here to help, so I apologize if you felt that we may be saying "pull yourself up by your bootstraps and get over it." ” title=”Very Happy” /> I don’t think that was intended by anyone. We went off on a tangent, a little. ” title=”Wink” />

The real message is to take good care of YOU first. There’s no need to apologize for having a bad day, or reacting to it. Sometimes you need to laugh, other times you need to cry, and occasionally you just need to think as you gaze out your window with a tasty hot beverage in hand. Do let us know when your days get really tough. We’re here to support you and help you through ~ to remind you that things will get better, because we’ve been there too, and we’ve made it. You will too. In the meantime, be kind to yourself.

[cathycnm]

#1075028

Mickey – In no way was anything meant as a put down. I was honestly impressed by your ability to stay positive in light of your situation. I have not always done so well – and you have reminded me that it is possible to do that. I see you as one who did not become helpless despite big challenges. That is a huge strength. Thanks for sharing it. Sorry if I came across as wrong. I find your story an inspiration!

[cathycnm]

#1075029

Hopeful – Your story is also amazing to me. I cannot imagine the huge loss you feel. It sounds sooooo frustrating. I do not feel like such a strong person these days – and I am sorry if my post came across as a put down.

Right now – it sounds like you have lots of symptoms and lots of frustration. Can I ask you – what do you see as your strengths? I see them in how you are dealing with this – because you are here seeking out help. I am sure there are many that don’t come through on your posts. So, even if you don’t share here – maybe you could jot down 3-5 strengths that you see in yourself dealing with this.

The other comment is that you mention nursing school and loosing your place there. As someone who teaches nurses – I will tell you that I am amazed at the "life" that comes between my students and their goals to be nurses. Many of my students are in midlife and still working on the goal to become a nurse. Some of the most powerful healers have come from a place of being patients. I became a nurse out of frustration with a system that had no clue how to deal with postpartum depression. I felt they wanted to make me crazy – and some of the things they said were downright hurtful. I remember one doc saying "I need to be spending my time with patients who are really sick so go back to your PCP because there is nothing wrong with you." It was sometime later – when I felt better – that I decided that I would try again (was rejected my first try) to get into nursing school.

As said – your healing comes first now. And I don’t mean to say you are not an optimist – just that Mickey struck me with her optimism. I have been less than optimistic myself recently about this illness stuff – and I am trying to shift back to a happier place. But expressing your concerns is good. It is so hard to be someplace where our purpose in life feels shifted without our consent. This is why I ask about strengths – because those are something no person or disease can take from you. And those shine through in your story. I, again, appologize if my posts seemed harsh – I am still trying to put together the "lesson" of my own illness in my life and was processing out loud. Cathy

[Hopeful23]

#1075030

No, I didn’t take anything to heart that was said. I know we are all on the same boat in one way or another ” title=”Neutral” /> I was just thinking if these people say one day it will be better than maybe I should just let this disease run its course and hope I feel better sooner than later. I just am trying so hard to work, stay in school and have somewhat of a social life I mean I am 23 years old and all i can do is work little shifts and sleep. It’s just like okay I want my old life back where I worked 40hrs a week, had a social life and sleep was 6hrs if that and was full of energy 24/7….I was a competitive dancer, gymnast and cheerleader and now I lay on my bed hoping one day just one day ill make it through a shift at work, wake up in the morning with a list of stuff to do and get it all done instead of two of the 10 cause i so anxious or tired…..Im suppose to be at work at 6 tonight and have no energy or concern to go. All I want to do is lay here on my bed and curl up or go to my bf’s house and watch tv with him till i fall asleep…I get my student loan in jan so its like i could let all my bills go till Jan 8 08 and not work and not have money for christmas or new years or I could tough it out and wait till i get my loan and quit. I filed for disability so hopefully that goes through which I doubt it will cause im ONLY 23….BLAH BLAH BLAH….what can i do except stay strong….well i have to go to work now so ill chat with you all later thanks again for all the kind encourging words/stories and reading my posts….. ” title=”Wink” />

[cathycnm]

#1075031

Hopeful – Somedays it feels like I am leaking (or hemorrhaging) energy. I started cutting out unnecessary projects at work before I even knew I was sick. Pretty soon I had cut out all the things I created because I liked doing them. Then it was drudgery. I am happy to say that this month has begun to feel a little like the old me.

I think you are very strong at age 23 to be dealing with all of this – WOW! How hard to be so active and to have this so seriously impact your life. I see a lot of persistance in you – for sure that is a huge strength. And dancing – so maybe creative. One thing that helps me is to keep using my strengths – even if it is in new (less energy consuming ways). I try to find things everyday. Small moments of joy are healing moments. Take care and let us know how you are doing.

[Author]

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